Family‑centred health care

Laine Cohen speaks to students in the Faculty of Health Professions about her family's encounters with health care professionals through the recovery of her son Daniel. (Bruce Bottomley Photo)

“Make us part of the team.” With those words, Lainie Cohen issued a plea, an indictment and a call to community to more than 900 student Health Professionals Tuesday night at the Rebecca Cohn Auditorium.

Ms. Cohen was in Halifax to talk about family-centred health care. Her audience: a packed house of first-year students from more than 20 health care programs, brought together to hear her family’s experiences with health care professionals in the aftermath of her son Daniel’s brain injury.

Daniel’s presence was invoked from the outset of her talk. His image—that of a young, handsome man, tanned and smiling—was projected for a long time behind her as she talked about her son before his injury. Affectionately known as a “jock” and a “hunk,” Daniel broke records in water skiing, loved to play hockey and basketball, was a camp counsellor, enjoyed his friends and family before a car accident at the age of 17 changed the course of his life and the life of his family and friends. Lainie Cohen wanted her audience to know her son in even this small way. “No two brain injuries are the same,” she said. “And no two families are the same either.”

Knowing the patient, the patient’s family and community, was an important theme for Ms. Cohen during her moving, illuminating and sometimes painful discussion of her family’s experiences. She argued that families must be involved as partners in patient care, and be allowed to have input on choices and decisions around treatment. “Families often feel disenfranchised,” she says, noting that a family’s wish to become participants in the treatment process can be viewed as a threat by some health care providers who may see family advocacy as too demanding or aggressive. But Ms. Cohen says, “If you’re not doing what needs to be done for my child, I’m going to be in your face.”

Lainie Cohen and her son Daniel. (Bruce Bottomley Photo)

She cites an encounter with a young resident as “one of the worst experiences” with a health care professional during Daniel’s long recovery process.  The resident stepped in after a neurosurgeon failed to show up for a family meeting almost two hours after a scheduled appointment.  She proceeded to describe a consultation in which the resident delivered a text book analysis of Daniel’s hopes for the future with all the warmth and sensitivity of an auto mechanic talking about overhauling an engine.

How information is conveyed to patients and families is “critical,” says Ms. Cohen. “Put yourself in the position of a family member.” She further advised students to “control” their choice of language and the amount of information given, cautioning that “readiness to absorb information varies” among patients and families. Other recommendations for future health care professionals included listening to patients and families, explaining what is happening in language that recognizes their often fragile state, and broadening the idea of family to include friends and other supports who can play an active role in a patient’s recovery. And she asks that health care providers not always go by the book. “Try some dignified risk taking. Sometimes the best answer is ‘I don’t know.’”

And finally, Lainie Cohen asked that health care providers learn to “facilitate hope.” She acknowledges that this is a controversial request of health professionals wary of misleading their patients. But she says, for example, test scores used to predict functional outcomes for brain injured patients only tell part of the story. “There is no measure for motivation, determination and tremendous friends,” she says.

Daniel Cohen has the last word on hope. Now employed and living independently, he reflects on his ongoing recovery: “It’s not how good you are. It’s how bad you want it.”